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Read a story
Kelly Story
My name is Kelly Story and I live with my husband, Chad, and two
cats in Kissimmee, FL. In July of 1999, one month after our wedding,
I was out of town on business, and I noticed tiny little water
blisters all over my hands. The blisters didn't itch and were not
painful. Although I found them to be very odd, I didn't worry much.
Over a short period of time, my skin became extremely fragile.
It seemed like almost anything would cause a scrape on the skin
of my hands. Plus, the blisters got much worse. My hands looked
like something out of a horror movie. I was so embarrassed all
of the time, and I cried a lot. I went to a dermatologist. After
two visits, he told me that he was fairly certain that I had PCT
but suggested that I go to a specialist. After several humbling
tests and weeks of waiting, I was officially diagnosed with PCT.
The doctor said that I would have to start phlebotomies. This
meant that over a pint of blood would be taken from me at one time.
Even after I began the phlebotomy treatments, the blisters moved
to my arms. These blisters itched tremendously. My poor husband
didn't know what was happening, because, I would wake up in the
middle of the night with a frenzy of scratching and crying. The
itching was unbearable. I would feel so guilty afterwards. After
all, I was receiving treatment for my condition and knew that I
did not have a fatal disease. There are other people in the world
with so much more serious problems. But, it was still uncomfortable,
and my hands and arms were just so ugly.
I was tired a lot during the six month or so period I was having
the phlebotomies. The doctor said that I would most likely be temporarily
anemic. This was the result of having the blood taken from me.
I used to do aerobic exercises at least four times a week, but
that stopped. I also got headaches quite often. Finally, I was
in remission. No more cuts, no more blisters, and no more itching.
I lived for a while with the dark scars on my hands from all
of the sores and blisters and several lighter ones on my arms.
But now, the scars have faded tremendously. You can't see any on
my arms, and the ones on my hands are very pale. It may sound vain,
but I never thought I would have pretty hands again, and now I
do. To this day, I still cringe if I accidentally knock my hand
into something. But, I am always relieved when I look down and
see no scrape or cut.
Since being diagnosed with PCT, I've taken estrogen and alcohol
out of my life, and I try my best to stay out of the sun. It's
hard living in Florida, but I just keep applying that good old
sunscreen. I'm very blessed to have such a supportive husband.
I told Chad on our first date that I was high maintenance. Boy,
neither one of us knew how much!
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